Winter and Juvenile Arthritis

“It’s cold.”

Is the usual beginning to conversations during winter, but a side to Juvenile Arthritis that many don’t know is how this weather effects our condition.

There are many different types of research done into weather and Arthritis. You only need to jump online to see, but there’s not much there in relation to Juvenile Arthritis and the weather. So I decided to undertake my own research through Kids Arthritis to see if I was the only one being effected this way.

“How does the weather affect your Juvenile Arthritis, Sarah?”

Is a question I’m asked when speaking at community groups or conferences about Juvenile Arthritis. The answer can sometimes surprise people. The weather plays a huge part in my condition. Each year until my 13^th birthday I was admitted to hospital for surgery in September/October due to inflammation and pain in my joints that needed to be removed. The fact that it was the same time of year every year made me always wonder, 

“I’m sure I am not the only one.”

Turns out I’m not and through the research, I undertook through Kids Arthritis, I found that a high percentage of those I spoke with had the same issue.

The beginning of Winter is when the pain is most severe during Winter. Swelling appears and your reliance on medication to get through the day becomes more prominent. Once again, this isn’t just something that happens to me, it’s happening to a high percentage of children living with Juvenile Arthritis in Australia.

 If you ever meet a child or adult living with Juvenile Arthritis rather than asking them,

“How are you?”

Ask, “Do you have any pain today?”

This shows to us that you do care and want to know how we’re really feeling.

Life with One Eye

At the beginning of 2017 I wrote a post sharing, ‘The Day I Lost My Sight’. I thank those for their questions and words of support, but there was one question asked by many readers: 

“What’s it like living with vision in one eye?”

This is a common question I get asked, as it’s a problem that many may never have to experience.

In the beginning simple daily activities; reaching for a glass of water or shaking someone’s hand were a huge problem. This was due to the depth of field issue. My brain had to re wire itself in how it saw the world and how far away objects were. 

Time went by when driving at night become an issue. I hear from older adults that they give up driving due to feeling unsafe on the road or those car headlights are too bright. I was 20 years old and had to give this up, something I’d worked hard to gain that gave me independence, but had to give up due to something I had no control over, Juvenile Arthritis.

Another impact was that the world I see is darker than others as there’s only light entering one eye, rather than two. This means when in rooms with dimmed lighting it’s disorientating and I can become light headed and everything that’s part of that feeling.

By far the biggest impact has been the risk of the condition that caused this in the first place, Uveitis affecting my left eye. If and when this happens, no one knows and what effect it will have on my life we will see at the time. But I never let any of this hold me back from achieving my life mission: “To change the way the world views Arthritis.”

Juvenile Arthritis Life Hacks

I will never let my chronic illnesses stop me from living my life.

I'll always attend celebrations or meetings no matter how much pain I'm in or fatigued I am. 

Since founding Kids Arthritis I've received many messages full of questions from children, their families and carers who finally have somewhere and someone to turn to for support. 

Many of these questions have been in relation to my experiences living with Juvenile Arthritis among other chronic illnesses. 

This month I've created my list of Juvenile Arthritis Life Hacks.

Medication and health conditions list.
This is helpful for many reasons. If you're in an accident and medical help needs to know these quickly, hospital treatment stays or if you require care from someone at your home who needs to be aware of this. Keeping it on the fridge, car, bag or anywhere in easy reach is a essential I believe when living with a chronic illness.

Office Chair as a Wheelchair

You'll never think of it the same.

Lists, Lists, Lists

The thing with this though is that it has too be done the night before as the next morning your body could be riddled with pain and stiff joints that just don't want to move. Having a plan of action for the next day is always a positive thing to stay motivated and focused.

Finally, Asking for help.
I've placed it last as it's the one I want you to remember the most. Asking for help doesn't make you any less capable of that job or task. We all need a little help from time to time in our lives. Whether it's washing the dishes, catching a bus to work or simply needing a listening ear. We all need to help ourselves, but help others when they need it too. 

Flowers for Charity

We all know a person that loves their garden, they may even be you, but my mother loves her garden for a special reason.

As a child I remember each year she’d take up more and more room in our backyard to grow more flowers which for 21 years she has grown, bunched and sold on the Echunga Main Street for Juvenile Arthritis. She does this between ANZAC and Mother’s Day. During this there are many community members who come together and show their support not only for the work my mother is doing, but for the 1 in 1000 Children in Australia living with Juvenile Arthritis.

I remember one year spending part of this time in hospital for Juvenile Arthritis related surgeries, but it didn’t stop the community passion to help support Children living with Arthritis. While my mother spent time in hospital with me, the volunteers were at our home creating bunches of flowers, as they knew that I wasn’t the only one living like this and by them helping more people would learn about the condition.

Another story is about the many times throughout the years when it would rain just before Mother’s Day. Now my mother spends all year cutting, watering and pouring a whole heap of love into these flowers and when the week before Mother’s Day the rain comes and ruins her work, it’s a hard thing to watch.

I need to mention these aren’t any flowers, they’re the special Mother’s Day flower; Chrysanthemums. Their unique smell and bright colours they’re the perfect flower to give a special lady or person. If you need a reason to grab someone a gift or add some colour to your home, head through Echunga between ANZAC and Mother’s Day to show your support for the 1 in 1000 Children in Australia living with Juvenile Arthritis.

My Favourites

This months blog has been inspired by one of our KAWarriors who asked me a very important question at our last Support Group.

"What are two of your favourite sweet foods to cook?"

They then went on to tell me about their favourite ones which consisted of chocolate chip muffins and fruit salad stick. 

I had to stop and think for a moment about the answer as I love cooking many different foods. If you're a friend of mine you'll know I love surprising them with muffins or slice. To either say thank you or just put a smile on their face. 

I get my love of cooking from my father. I remember being a child and waking up to the smell of pancakes on the weekend and trying to guess what flavour they might be. Banana was and still is my favourite covered in ice cream and fresh fruit. They would be in different shapes and letters, but always made with love. 

Now that I'm older I still love my dad's pancakes, but enjoy making them for him on the weekends. Covered in maple syrup with juicy fresh fruit! 

My other favourite sweet treat to create is no other than my Grandma Oinn's banana cupcakes (are you seeing a pattern here?)

They are so easy and sometimes I even had a hint of chocolate chip or sultanas in there to mix it up. 

Both are incredibly easy to create and so delicious that you can't help, but share with others around you!

Eating a healthy diet is so important to everyone, but when you live with Juvenile Arthritis it's even more important. The statement: you are what you eat, is incredibly true and should be remembered on a daily basis when making food choices.

If you would like any of my two favourite recipes, please let me know as I'd love to share them with you!

Little Red Dots

It's not the Juvenile Arthritis that impacts you the most, it's the side effects.

I've had and still live with many different side effects due to my Juvenile Arthritis.

Minor things like hair loss to extreme fatigue and Lupus, but the one everyone sees the most. Those little red dots.

What are those little things?

Well for starters they're far more itchier than mosquito bites and take 10 times longer to heal.

They get worse before they become better and are in the most annoying places. 

Two years ago I had a sample of one of these little dots taken. It was the most painful thing I'd had done to my skin awake. The result from that was medication side effect.

If you've read my previous posts you would know the only medication that can give me the relief I need currently is Meloxicam. A medication that's eating my stomach lining, but means I can walk. Factors like spending time in the sun (the tiniest amount), covering up my skin for extended periods of time (in winter) makes them worse. There's no way to get rid of them and covering them up makes it worse. 

There not only over my arms and back, but the part everyone looks everyday. FACE. 

With the power of make up the ones that aren't oozing or sticking out like Mount Everest can be covered up. As for those ones.. Cleaning my face twice a day, keeping my hands away while there's no make up on and drinking plenty of water, seems to do the trick. 

Living with Juvenile Arthritis is much more than just painful joints and taking medications. It's dealing with people judging you about something on your skin that you have no control over. 

That New Medication Face

I was recently sent an article titled 18 Things People With Autoimmune Diseases Want You to Know out of the 18 things this particular meme stood out for me.
Not only does the Meerkat appear to be on Prednisolone (Arthritis medication that can make you gain weight and become round in the face), but looking as if there's a glimmer of hope for the new medication. 

The face I used to create when my Rheumy informed me that yet another medication was available for trial, was somewhat different as I grew older. 

Much like the Meerkats face, there was some hope, but as I got older it became an annoying problem.

I know what you're thinking.

"but Sarah isn't a new medication a good idea?" 

Well reader, it can be. Sometimes you think.

"This is the one! The one that means I can be pain and side effect free for the rest of my life."

Other times, especially as I became older and could realise more about my condition it became more like.

Sarcasm "Great! A new medication which they know little about that will only help me for a short period of time and leave me with life long side effects."

You can tell how my view on the medical world and how I was treated changed as I became more aware of how it functioned.

Don't get me wrong. Some children just need one trial of medication and it works for life. What I say to those people is Well Done! I would just love to be that child.
Others like myself, are not so lucky. 

It was always a different medication around every 3 to 5 years. Yes this may seem like a long time, but remember I'm only 22 years old. 

The question you have now, is what medication am I currently on?
Well the best medication in Australia is unable to help me, so I've had to take a step back and consume a little tablet each day that's eating my stomach lining, but allows me to walk. Yes, you read that right. These are the kinds of sacrifices a child has to make who live with Arthritis. 

I know that there's children, parents and careers out there who are reading this right now and can understand how this feels, but to people reading this and learning about Juvenile Arthritis. Thank you for taking the time to learn more about this hidden yet common condition as it's people just like you, who will help change the way the world views Arthritis. 

Alone and Full of Pain

Many people ask: How do I manage to undertake daily activities when there's nobody around to help me?

Well if you lived your whole life in pain and having to find other ways to do the 'simple' daily tasks, when you get older and can sometimes be alone during these times you find away very early on.

For example. I keep all my sneakers (don't like calling them running shoes, as I don't run) with the laces tied up for easy accessibility.  Socks on the other hand are much harder, If I need to wear socks for the day I have to ask someone before they head out for the day to do it for me. Besides sneakers and socks I have many shoes, like most females but they all have one thing in common. If I can't put them on alone, then I don't buy them. This is hard sometimes as I can see a pair of shoes in a store and just want to wear them, but know that due to my Juvenile Arthritis it's just not possible. 

Another problem is brushing my hair and teeth when my elbows are swollen up like balloons and are stiff as wood. This is where my opposite hand comes in handy. It may take a lot longer to undertake this simple task, but it has to be done.

As many of you know I used to attend swimming lessons every Tuesday. Since my Juvenile Arthritis hip problem that will never go away. Not sure what I'm talking about? Click here. Swimming is another activity that I find hard. My legs due to my right hip aren't strong enough to push me along in the water, so now if I'm swimming my arms have to do all the work. This has it's problems too, as my elbow and wrists joints then are more likely to become swollen.

I hope by now you have realised that nearly everything I undertake always has another effect. Sometimes good other times bad, but always related to my Juvenile Arthritis. 

People think that Arthritis only effects the elderly, which in fact it doesn't. 

People also think that Arthritis only effects your joints. It doesn't. 
There's a flow on effect that I have lived and will continue to live for the rest of my life. 

This is happening and happens to 1 in 1000 Children just like me in Australia. 

Got a burning question you just want to ask me? Please send me a message through Ask Sarah on the Kids Arthritis Australia website.

Pain and Juvenile Arthritis.

It's in our nature to just give out advice, even if we don't fully understand what the other person is living through. 

Throughout my life I've been given plenty of non professional advice from people just trying to help. I get it, you can't stand to see Little Sarah in pain, well guess what. There's nothing anyone can do about it, even myself. 

Every child living with Juvenile Arthritis is different. 

In the weekly #SupportMondays poll in the Australian First Online Support Group run by Kids Arthritis Australia, I asked parents and careers what was the best way to reduce their child's pain.

Number one answer. Medication.

Medication in 2016 is strong, toxic stuff, but you know most of the time it gives the relieve the body so badly needs. It might be overwhelming for the parent to hear all the side effects that come with the medication, but recent research has shown that with early strong medicaiton intervention the child's JIA could be better off later in life.

Second answer. Heat/Cold Packs.

Whether it's winter or summer a child living with Arthritis body needs to be at a good temperature (just like anyone elses). With the interaction of JIA and medication this can be a problem. Hot packs are also good for pain during winter and cold packs are great for sudden joint swelling.

Third answer. Good nutrition and exercise.

I know as an adult eating right and exercising can be hard, but for a child living with Arthritis sometimes and they might not even know it, can get medication cravings (yes another Sarah word).
When I was having Actemra, the craving I received after the infusion was salty foods and it became a tradition that I would cut up fresh potatoes and deep fry them and eat them with dinner that day. It just happened and I don't know why. Exercise can also be hard due to pain and stiffness, but with the help of your local physiotherapist this can be made easier.
Excess weight is bad for anyone, but if you live with Arthritis and you become over weight you place more stress on your already stressed out joints which creates more pain.

What other ways do you reduce pain?
Share it on Facebook.

Driving with Uveitis

Living with severe Juvenile Arthritis has it's problems.

Never ending pain, stiffness that just doesn't go away, constant reliant on medication, I could go on..

Driving is one of those things that most people take for granted. 

Need more milk or bread? Just jump in the car and drive to the shops.

Got to pick up your friends from the work function? Just jump in the car and pick them up.

In the above two scenarios I've mentioned two of the problems I have l have living with Juvenile Arthritis.

You can never just "jump in the car' to get something. If having Juvenile Arthritis was that easy you'd all want it. Especially at night time it's the hardest. 

Driving to and from my weekly radio show is a problem I have especially during the winter months, as by the end of the show it's pitch black!

Living in a small country town doesn't make it any easier due to the lack of public transport, sorry, no public transport at hours that anyone would want to use it. 

I'm very lucky to have some sight in my left eye and each time I drive I'm grateful for the privilege.

Working and Juvenile Arthritis

South Australia has the highest unemployment rate which makes it harder for those living with a hidden condition to gain employment.

I believe I was quite lucky when gaining my first job. I was a member at the gym and had spoken with the manager on a regular basis, but when it came to a second job. It was a whole different story.

I've been through the whole cold canvasing walking around and handing in my resume at every Arthritis friendly work place. Applying online and not getting anywhere. 

When I would finally get invited for an interview I knew I had two choices.

1. Disclose my Juvenile Arthritis.
2 Keep it a secret and not disclose.

Everyone with a disability have this choice and is something that children who live with Juvenile Arthritis may one day have to face.

I choose each time to disclose.

Now you're thinking; well it shouldn't make any difference, but it does and disability discrimination happens. I've had to deal with it all my 22 years of living.

Those people who judge as I park my car in a disabled permit zone or those who wonder why I just walked out of the disabled toilet at a venue. This can be seen as disability discrimination in the community.

We all have choices and a young person living with Juvenile Arthritis doesn't just have to deal with the pain and stiffness of the disease, but the thought of gaining employment one day. 

This is one of the reasons I began my own business in the health and fitness industry and eventually Kids Arthritis Australia. So that employers and employees will understand what Juvenile Arthritis is and how to support someone who lives with it.

Click here for more resources on this topic and feel free to get in contact regarding this as well. This is why Kids Arthritis Australia and I are here, to support children, their families and careers living with Juvenile Arthritis. 

Fitness and Chronic Illness

What were you doing at 17 years of age?

Had you finished school? Were you dating your current partner? Annoying your siblings? or all of the above? 

At age 17 I asked my mother if she would take me to the Australian Institute of Fitness in Adelaide to apply for study.

This was a HUGE shock to my family, as I'd always despised exercise due to the pain of it all and the lack of motivation due to it. I could understand and control my Juvenile Arthritis more by this age and wanted to learn how to help others through health and fitness.

Sure enough we headed from the Adelaide Hills to the big smoke, hopped on the new Adelaide trams (for the Adelaide residents among you) and headed to the Institute. After a few hours we walked out and I was accepted to gain a Health and Fitness Qualification.

Due to completing Year 11 and 12 at the time, I had to take on the study as part of my SACE. This was a challenge as not only did I need to juggle school subjects, but this qualification and my Juvenile Arthritis. 

During the study there was many practical parts involving intense exercise, but I always managed to complete and pass just in my own little Sarah's Way. If you have a child living with Juvenile Arthritis, you know what I'm talking about. 

12 months later I was a qualified health and fitness specialist. 

At age 18 years my first job was at a local gym and from there I began my own business. This was a fun and rewarding experience. I met many people with different goals out of life and this was always the best part. People would come to me with all walks of life. I ran many weekly exercise classes, even one in a Pub. Many days were spent in my gym creating personalised programs and making memories with everyone who walked through the door.

Earlier this year it became a little too much running a small business (that wasn't quite small anymore) and a large national organisation. After 6 years in the industry I focused more on Kids Arthritis Australia.

People who have read my other posts would know that each day I exercise with heavy weights, as it's the most effective, natural way to help the Juvenile Arthritis stiffness and pain to cease for the day.

Don't get me wrong some days it's just too much to exercise, but you'll still find me battling on lifting those weights to make the day that little bit easier.